In Their Own Words – What Does Autism Mean to You?

Derrick is the father of two wonderful children, one of which, Lucas, as autism. He is a devoted member to the autism community, and has been involved in activity for years. He and his wife, Sandrine, created the South Carolina Autism Services Directory to help parents locate services available for autism, and The LUCAS Network (Loving Unconditionally Children with Autism Support). He is also the Family Services Liaison for Autism Speaks in South Carolina. Derrick succeeded in getting two buildings in South Carolina to “Light It Up Blue” this year, and has worked to light up the BMW Zentrum Museum2011 Campaign.

What does autism mean to you?

What would your answer be if someone asked you this question? I guess it would depend on how you have been personally affected by autism. But instead of focusing on all the different answers someone else would possibly give, let me answer the question from my point of view.

Autism means so many different things to me. It is at the same time my salvation and my tragedy. Autism came into my world back in October of 2001 when my son was diagnosed. At that time, it was the end of all the dreams I had in my head of what my son might become. It was a time of entering into an unknown world full of alien language and signs I could not read or understand. I entered into a completely new culture in which I had to learn by trial and error. Living in France and Austria in my early 20’s did nothing to prepare me for this new world. The movie Rainman was so far from my reality. Every parent I met that had a child with autism had a child that was so different from mine. My wife bought books to read and asked me to read them as well. I would pick them up and start and then put them down again. I could not wrap my head around what I was reading. It was as if it was written in Chinese. I just could not accept this world that I had been thrown into and was being forced to be a part of. For two years I fought and refused to accept this thing called autism. I could not accept being told that my son would never talk or get a job or drive a car or go to his high school prom. I was tired of being told what my son would never do. How dare they! How the Hell could they know what he would become! Then finally, depression set in and although I tried my best to hide it from my wife and family, I gave up for a few months. I think that Lucas could sense the despair because just when both his mother and I would think he would never do this or that, he would do it the next day to show us that he could. After about a year of ABA we finally started seeing some signs of progress. Slowly at first but then he would have a burst, as we would call them, of progress. I could see the real Lucas struggling to come out from behind the veil of autism and I saw for the first time my son, his desire to be seen and heard by his father and to have his father fight for him as he was fighting for himself. From that moment on, my way of viewing autism changed. It went from being my worst nightmare to my saving grace. As I have watched my son grow in all senses of the word, I have seen a child so full of love, so innocent, and so strong of will attract one person after the other into his life and the impact has been enormous for all of us who have been lucky enough to have him in our lives. To know Lucas is to love him. His strong will to succeed has transformed me into a father that will have the same will and determination to advocate for Lucas and others like him until the day I die. Now, although I still wish my son did not have autism, I cannot imagine my world without Lucas as he is. Autism to me is that one piece of the puzzle that you know is there but have not yet found; but you know when you do find it and complete that puzzle, you will have the most beautiful and complete picture you have ever seen. For me and Lucas, together we are putting those puzzle pieces in place one piece at a time and although we are currently only half way to finishing that picture, together we will continue to put the puzzle pieces into place.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

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Autism means recovery. I was already in a lifelong recovery from TBI, severe head injury (closed), from a car crash, someone fell asleep driving at night after a drink and a fling; returning to his wife. He was then absorbed with so much self pity over my near death he tried to kill himself.
But that was ’92, my son was born in ’98. I had recovered very well, even returned to a technical part time job, he was diagnosed and we: my husband, I and his mother dove into this with sirens blaring. We were determined to do all that we could, to give Eric his best shot at life.

He was born healthy but 5wk early, thus his late steps to growth were attributed to that; but being with him 24-7 I could see there was more than their gross generalizations to be considered. I had a head injury and as an engineering researcher I had read about my injury and the belief that autism was a form of injury to the developing brain. He was at times very sensitive to light, and to this day 12yo he still puts his hands over his ears with slightly high pitched sounds. Autism – the 5 senses do not develop normally.

We had decided to meet a physician who was also treating this condition scientifically rather than simply following a book that did not have any answers. Our son has since been diagnosed with a condition, a DISEASE, that causes autism symptoms. This disease would, under no circumstances, have been found by an ordinary pediatrition. It is believed that 30% of all males with autism suffer from this disease. The condition itsself has not been accepted by WedMD; although it has been seen and diagnosed by many many accomplished physicians. The first one managed to have his physician liscence ripped away, which brought more light to his discovery that the pharmacies had originally hoped to smother.
This GI disease is called ILNHP, illeo lymphonodular hyper plasia. The gut is unable to digest certain food correctly and they are absorbed in the bloodstream and cause a wide variety (a spectrum) of symptoms. This is not caused by thimerisol although it reduces the body’s ability to filter out heavy metals properly from toxins which easily enter our system. So, in retrospect, because there was TOXIC heavy metals directly injuected into his bloodstream and the filtering system was damaged (maybe from the THREE diseases injected at one time, MMR). Is there a placebo controlled study showing the safety and effectiveness of the MMR vaccine? Ask your pediatrician. Ask him to become a DAN Dr.
Please find a DAN professional and learn, it is not too much to learn. Join Support Groups, read summaries of studies that have shown results. We started our son on the GFCF diet very young. We did not see any miraculous cure. We saw very little, but maybe slight improvements. But we kept on this diet because the test (France) had shown conclusive sensitivity (it doesn’t always) and even if it did not we would have remained on it. Long ago, it was the main hope we had for our child. I did not want to give up just because it was hard for me. As a parent that is my duty. I gave up my career, my husband pushed on, diversifying our income. What we did had helped him in the long run. We had the Sxxx-filled nights, he’s overflowed the toilet lots. He has blown up in public (although we give thanks to it’s rarity). I did ABA training and he’s done it non-stop for years and he still can’t have a conversation. But he can talk if he wants. And he did say one time, it hurts to talk. We don’t know. Typical medical doctors are taught from books and are given recipes to follow to cure. This has no cure and it is our duty as parents to solve this puzzle. With the web, maybe, somehow, somewhere, love will find a way. My son will likely live at home the rest of his life, but he will still have a life.

Even though my son wasnt diagnosed until after he was in elementary school, I had tried getting his pediatricain help me figure out what was going on with him even as young as the age of 1 year old. He did not like change what so ever. He wasnt progressing as he should have been for his age range, but he could build anything he wanted to with those big lego blocks. Back then some of teh things i just shook off to his own lil persoanlity, but now i know different. At the age of 2 I could tkae him to teh park to play with other kids and he would go off by himself and play laone and even with me bringing him back over to teh toehr kids we would always end right back up in that smae area alone playin all by ihmslef again. Then when he hit 4 years old I put him in pre-school. He almost got kicked out twice due to volent melt downs with the teacher, but they said it was like if they were outside and they said time to go in he would kick and scream , i took it as he was just spoiled at first. Well i also noticed at the age of 2 he would pick out his own clothes, his room had to be a specific way, and if anything got out of place in that room or anything of his was gone he lost control of himself. Well i had expressed my concerns with his pediatrician at the age of 3 and she said she thought it was due to his new lil brother. So after multpile doc apps i would tell of other lil things that seemed od to me and could never get any help to find out maybe why or what was the cause of him doing this. But ya dont look at your toddler who u think is just being smart by already picking out his own clothes and loving these favortie boots as summin being wrong. or i didnt anyway. I took it as he was advanced for his age in that aspect. then one day at the age of 4 i picked him out school clothes and let hi sleep in a lil bit and went to get him ready. i started dressing him and all of a sudden he hauled off and slapped me because i had him the wrong shirt to wear. I

Lisa I can relate to the sensativity to light and sound. My son is 13 now and he is still that way light both. He will sometimes ride during the summer with a cover of some sort over his head to block it and he also has came from his room into the livingingroom where my and my sister would just be generally talking, he comes in here all flusterated sayin we are being to loud and his room is at the other end of the house from where we were. Noise has caused him to go into full blown melt downs before. He also has a loss of balance, he didnt even ride or attempt to ride a bike until a couple years ago. I have battled and still battling the school because he has a high IQ and they say thy arent now but they are to an extent labeling because they think they can toss him in a room full of classmates in a regular class and he should be able to keep up and succeed just as they do. Like one inncodent thios year and school just started.he wore a button down shirt to school one day well it kept coming unbuttoned when he tucked it in. it was a silky material so it wouldnt stay tucked right. well at the end of the day on his way to his bus line the principal yelled at him a bout his shirt literally in his face. and he led him into the restroom still yelling at him and my son said if u will please shut up i will tuck my shirt in. Now i wouldnt have foud this an issue other than two things. 1st this was on his way home he had worn this shirt all day long liek this and i ahd spoken with ppl at the school twice durinig that school day and was never told anything about his shirt. 2nd: They have his IEP form previous years and they know with him u can not yell and get in his face because he jumps into defence mode automatically and he can and will get extremely arrgessive. That was the first issue at this new school he is at thsi year. the second issue I had with them is a teacher taunting him behind his back. My son shuts down if he feels anxiety or uncomfortable so he sleeps in this one class often. his teacher actually balled up papaer in front of this whole class and acted like she was going to throw it at my son, rolls her eyes at him and growls at him and does all this in front of his classmates, plus once hit his desk with a ruler so hard it jarred his whole desk and shook it. I found out before all this he was getting bullied, then after i found that out from the one friend he has in the intire school his cousiin whos in his class where the teacher was doing this told me about the stuff the teacher was doing to him. I called a meeting and this woman admitted to doing this to my child. Never denied it first she tried to play it off as thast how she jokes with all her students, then she openly admitted she mainly does it when hes asleep and she cant get him awake. shes gonna stress kids cant see him sleeping, well i stressed kids shoudlnt see u doin this to my child either that could be where the whole bullying stemmed from.You know that principal never said a word to her for doing this to my child. but when he told the principal if he would please shut up he would tuck his shirt in he got ISS in school suspension. i also told them that day if my sn said please that was asking nicely for him. They want me to say why hes sleeping in class but i cant cuz it can be a million things thats causing him to do it. anything from stress in the classroom to him being scared of that teacher. And what realy irritated me about the teacher was she was in our military and served our country, but gonna come home and do this to one of our own!!!!!! Yes I have gotten our board of education and the special education cooderanator involved plus emailed our govenor.

Derrik, it’s interesting to hear from fathers and how they cope with an Autism diagnosis. Thank you for sharing your story and for advocating for our special children. Best wishes for you and your family as you travel on this road.

We found out our son has autism 12 years ago.. he was 1.. at the time we had no idea we just thought he was a tad slow with a few things.. I will say though he is a gift from God and a blessing.. Always Unique Totally Interesting Sometimes Mysterious… right now he’s in a special clinic with other children who have autism and learning disabilities.. he has changed quite alot from what he used to be.. I had been praying for his healing along with several other people praying for him.. if u believe it or not God DOES answer prayers in His perfect timing.. I know He has answered ours and He’s still listening and answering us.. There is HOPE at the end of that seemingly dark tunnel.

Autism is another way to isolate people from one another. People with ASD are different in their own world. I do believe that they are more extraordinary than people without the disease. They are much smarter and organized. A normal person cannot even reach that type of level. Autism can be realised before a child is three years old. Autism affects organization of nerves in the brain. Autism is caused by birth defects such as a mutation. It is the children who suffer unecessarily. When I see someone with autism it really burns me up inside. I don’t like to see kids suffer and would do anything to help them out. Autism makes the normal person realise that love is the strongest element that we live for. Kids with autism make people around them aware and understanding. If everybody thought about autism for a moment and how kids suffer with it, we would be able to rake up enough money for charities. People need to be aware that there is always someone out there that is unlucky, we should find a way to help the unlucky ones.